Karen Armstrong and Helen Kerr Each individual with a diagnosis of cancer should be allocated a key worker to improve continuity and coordination of care. The key worker role is often an important component of clinical nurse specialists in cancer services, who are ideally placed to fulfil this role. The role may be operationalised using different titles, such as key worker in the United Kingdom, professional cancer navigator in Canada and the United States of America and cancer care coordinator in Australia. Irrespective of the title, key workers are known to positively impact patient care through the delivery of information, provision of emotional and supportive care and coordination of services. Identifying the appropriate professional to be a patient’s named key worker is often driven by the cancer multidisciplinary team, and challenges remain regarding consistency of provision and effectively communicating this to patients. Care should be taken to avoid over‐reliance on the key worker role within the multidisciplinary team and to ensure ongoing patient empowerment. The term key worker has been used frequently in the media during the COVID‐19 global pandemic. In a broad sense, key worker is used to define an essential employee working in the public or private sector in a profession considered essential to society (Betterteam 2021). A key worker in healthcare, particularly the oncology setting, is a ‘person who, with the patients’ consent and agreement, takes a key role in coordinating the patient’s care and promoting continuity, ensuring the patient knows who to access for information and advice’ (National Institute for Health and Care Excellence (NICE) 2004, p. 42). This chapter will explore the concept of a key worker in cancer services and consider whether the cancer clinical nurse specialist (CNS) is often best placed to be a patient’s named key worker. It will consider the advanced nursing skills required to successfully navigate the role and how these intertwine to impact direct and indirect patient care. Drawing on the first author’s experience, the chapter will provide an overview of the key worker role in practice and discuss how challenges may be effectively managed. The chapter will conclude with a clinical example of challenges in practice and how the first author addressed these to change routine practice. The first author is currently working as a band 6 gynaecological oncology CNS in the Northern Ireland Cancer Centre, Belfast, providing direct patient care for individuals with a diagnosis of gynaecology cancer. This is a unique role, as the author works across both gynaecology oncology surgical services and gynaecology clinical oncology services. The author has held this post from its creation in 2017, having previously worked in an inpatient gynaecology and breast surgical oncology ward for three years. The second author is a senior lecturer at the School of Nursing and Midwifery, Queen’s University Belfast, with a clinical nursing background in cancer and palliative care. The ‘key worker’ concept was introduced within Cancer Peer Review measures and supported by NICE guidelines to improve the continuity and coordination of care for patients with cancer (NICE 2004; NHS England 2010; Ling et al. 2013). NICE (2016) guidelines advocate that each individual with a diagnosis of cancer should be allocated a key worker. The key worker should be a core member of the multidisciplinary team (Belfast Health and Social Care Trust (BHSCT) 2019) and may be a community nurse, allied health professional, nurse specialist or social worker (NICE 2004). The idea that the key worker role is a ‘role’ rather than a job title allows professionals with the appropriate knowledge, experience and skills to fulfil this role. This means being a key worker is an aspect of the healthcare professional’s role. The key worker is an individual designated to provide advice, information and emotional support; coordinate care; and help the individual navigate services. There are a number of drivers to be considered in deciding who is best placed to be a patient’s named key worker, such as the context, patient needs and skills/knowledge required to support patients and their families. In the cancer setting, multidisciplinary teams (MDT)s are required to identify a named key worker (NICE 2004). Although there is no national guidance on how the key worker role should be implemented, most cancer services in the United Kingdom (UK) have an agreed key worker policy that sits within or alongside the MDT operational policy. These policies are likely to have been developed in response to Cancer Peer Review measures as outlined by the NICE guidelines (NICE 2004). These policies often advocate that the key worker allocation should be reviewed at key points in the patient’s cancer journey and in doing so may transfer to another named professional, depending on the patient’s personal circumstances or clinical condition: for example, at diagnosis, commencement of treatment, completion of treatment, disease recurrence and the point of recognised incurability (Welsh Government 2014; BHSCT 2019). However, the transfer of a key worker should be made with caution, with changes kept to a minimum and appropriately documented and communicated to patients and the wider MDT to ensure continuity of care (BHSCT 2019). The key worker policy outlines skills required to fulfil the key worker role, and many document as essential criteria advanced communication, advocacy skills and the appropriate knowledge or ability to source relevant information to meet the needs of the patient (Welsh Government 2014; Macmillan Cancer Support 2015; BHSCT 2019). These are areas where the cancer CNS is known to make key contributions to cancer care (NHS England 2010), which supports the ethos that the CNS have been long since recognised as ideally placed to assume the role of key worker for patients with cancer (NICE 2004; NHS England 2010; MacmillanCancer Support 2015; Department of Health Northern Ireland 2022). Furthermore, data from the Northern Ireland (NI) Cancer Patient Experience Study (Department of Health Northern Ireland 2018) demonstrated that the support of a CNS is the single most important factor in a patient’s experience of care. This sentiment was also supported in a recent literature review that included 14 worldwide studies and identified the oncology CNS role as one that contributes to improving patient outcomes and enhancing cancer care (Kerr et al. 2021). A key worker policy recognises that a patient should have a named key worker identified within the MDT; as previously outlined, this may change during the course of the patient’s care pathway depending on the patient’s personal circumstances or clinical condition (BHSCT 2019; Barnett 2014). Patients from a small in‐depth UK survey highlighted that they would prefer their named key worker to remain the same throughout their pathway, irrespective of changing treatment modalities (Ling et al. 2013). Within its evaluation of the contribution of the oncology CNS, Macmillan Cancer Support also advocate that the CNS should act as a key worker across the whole care pathway (NCAT 2010). Whilst there is clear guidance for quality assurance through peer review (NHS England 2011), this may not always occur (Department of Health Northern Ireland 2010; Ling et al. 2013). For example, the MDT may identify and document the CNS as the patient’s key worker; however, the patient may not be informed that the CNS present at their diagnosis is their key worker. This widespread lack of patient awareness is further highlighted in patient experience surveys (Department of Health Northern Ireland 2010; Quality Health 2018), where, confusingly, reference is made to CNSs rather than to key workers. The interchangeable and inconsistent use of terminology has the potential to confuse patients and reduce continuity and coordination of care (Ling et al. 2013). Furthermore, staff from a number of studies disliked the term key worker as a replacement for their own specialist roles (Ling et al. 2013; Martins et al. 2016). Despite roles being operationalised using different titles – for example, key worker in the UK (Ling et al. 2013), professional cancer navigator in Canada and the USA (Martins et al. 2016) and cancer care coordinator in Australia (Freijser et al. 2015), the roles share three core characteristics. These relate to the provision of information, provision of emotional and supportive care, and coordination of services (Martins et al. 2016), and each will be explored further. Abrahamson et al. (2010) advocate that meeting the individual’s information needs, as identified by them, leads to patient empowerment and an increase in patient participation in their own care. With improvements in digital technologies and the introduction of social media, there is also the emergence of an ‘e‐patient’ (De Bronkart 2015; Richards et al. 2015). This brings a change in the flow and accessibility of knowledge. Patients now have access to information that may have previously been reserved for those in the medical profession. Combining the key worker’s training and clinical experience with the patient’s new knowledge, life experience, needs and priorities can help improve overall care, increase patient autonomy and encourage shared responsibility (De Bronkart 2015; Richards et al. 2015). Despite this, some apprehension remains within the medical profession regarding the credibility and reliability of online information and the value of patients ‘googling’ their conditions (De Bronkart 2015). Online support groups, which may not be governed by a recognised body, may also be criticised in that they lack regulation and offer individual opinion‐based advice, which may not be factual or helpful to patients. This further highlights the need for the key worker to assess patient information requirements and provide verbal and written information concerning their diagnosis, investigations, treatment options, living with cancer and signposting to local support services (BHSCT 2019). Patients with a diagnosis of cancer often experience multifactorial distress that can encompass psychological, social and spiritual elements, which may result in patients being frightened and vulnerable and, often, unable to understand the full implications of the treatment they are being offered (Buckley et al. 2018). The cancer CNS or other key worker can provide supportive care, appropriate information and individualised care planning for the patient and their carers/relatives, as well as acting as an advocate for the patient within the wider multiprofessional team (Dempsey et al. 2016). Providing direct care by way of psychological support to patients and their loved ones is recognised within the NI Cancer Patient Survey (Department of Health Northern Ireland 2018) as instrumental in improving the patient’s journey. A primary aim of the CNS key worker role is to offer holistic, whole‐patient care whereby patients feel supported and know whom to contact with their queries and concerns (NICE 2004). Several tools and interventions have been developed over the years to move away from acute, episodic care to a holistic, personalised approach that is well coordinated and integrated. One such example is the Macmillan Cancer Support Recovery Package, now further developed and named Personal Care and Support Planning (PCSP) (Macmillan Cancer Support 2021). PCSP facilitates patient support conversations and holistic needs assessments (HNA). Although this can be utilised by any professional, it is often the CNS, as the patient’s key worker, who offers and completes the HNA and/or PCSP with patients at key points of their care pathway. These supportive conversations and completion of the HNA not only help to build rapport between the CNS and the patient but also allow the patient to take an active and empowered role in the way their care is planned and delivered. They offer opportunities for information giving, patient teaching and interventions tailored around the things that matter most to the patient and in the context of their life and family situation (Macmillan Cancer Support 2021). In addition, they facilitate proactive management of care, which is thought to result in better patient outcomes in terms of survival, quality of life and decisions at end of life (Leary et al. 2014). In practice, support conversations may also be informal and reactive, recognising that most interactions between the CNS and patient are an opportunity to ensure that patients feel supported and empowered. The advanced nursing skills of the CNS – and, as defined by NICE (2004), the skills required of a key worker – offer effective communication and coordination of patient care and ensure that patient information needs are met (NICE 2004; Buckley et al. 2018
5
Key Worker Role
Abstract
5.1 Introduction
5.2 The Key Worker
5.2.1 Provision of Information
5.2.2 Provision of Emotional and Supportive Care
5.2.3 Coordination of Services
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